Granadilla celebra hace más de una década una Jornada sobre Enfermedades Raras, único municipio de Canarias

San Isidro acoge el XI Encuentro este jueves 25 de abril con la participación de numerosos colectivos y de FEDER.

Granadilla de Abona celebra su XI edición de la Jornada de Enfermedades Raras en Canarias este jueves 25 de abril, siendo el único municipio del Archipiélago organizando un foro de encuentro sobre estas patologías poco frecuentes desde hace más de una década. La iniciativa, organizada por la Concejalía de Salud que dirige María de la O Gaspar González, y la colaboración del Gobierno de Canarias y la Federación Española de Enfermedades Raras (FEDER), tiene como lema ‘Un desafío integral y global’. La cita será en el auditorio del Espacio Cívico de San Isidro (SIEC), de 9.30 a 14.30 horas, dándose cita diferentes colectivos, asociaciones, afectados y familiares, así como público en general, para trabajar en pro de la sensibilización y hacer un llamamiento sobre la importancia de la investigación y del trabajo en red.

El alcalde, José Domingo Regalado, explica que se trata de un encuentro que se ha convertido en un referente a nivel regional, y al que acuden un mayor número de colectivos relacionados con las enfermedades raras en cada edición, así como profesionales del ámbito sanitario que están interesados en unirse a la línea de trabajo desarrollada hasta la actualidad, siempre de la mano de las instituciones, asociaciones y profesionales, para entre todos aunar esfuerzos y recursos que ayuden al bienestar y calidad de vida de aquellas personas que sufren algún tipo de enfermedad poco frecuente.

María de la O Gaspar señala que esta Jornada está enfocada a servir de plataforma a todas las personas afectadas y sus familias para hacer visible sus necesidades e inquietudes, además de exponer lo que en Canarias se viene trabajando y desarrollando a nivel institucional, sanitario, social y asociativo en lo concerniente a patologías poco frecuentes. Agrega que, también, se centrarán en ofrecer información actualizada en cuanto a movimientos asociativos y líneas de actuación y de investigación. “Nos parece necesario sensibilizar a la sociedad, a la comunidad sanitaria y a todos los agentes que intervienen en el día a día de aquellas personas que padecen patologías poco frecuentes y sus familias, y mostrarles  referentes y recursos existentes a los que poder acudir para recibir sus servicios” apunta la edil.

Este encuentro contará con la colaboración de FEDER, que con su representación en el territorio canario, apoya este tipo de acciones que se organizan en el municipio, además de ofrecer el Servicio de Información y Orientación sobre Enfermedades Raras (SIO), de carácter gratuito y destinado a personas afectadas por una enfermedad rara y sus familiares, a las asociaciones, a estudiantes y a profesionales, entre otros.

Ponencias. Entre las ponencias figuran la titulada ‘Rara es mi enfermedad, no mi realidad’ por la representante del Colegio Oficial de Psicología de Tenerife, Cathaysa Fernández; ‘El cribado neonatal como herramienta de diagnóstico en enfermedades raras’ por Carmen Rosa Rodríguez Fernández-Oliva de Pediatría y la dirección general de programas asistenciales del SCS; ‘Pinceladas sobre la nueva Ley de Servicios Sociales de Canarias’ por la trabajadora social del Ayuntamiento de Granadilla de Abona, Nayra Santos Dumpiérrez, o ‘Síndrome de O´Sullivan-McLeod, abordaje desde la fisioterapia’ por Fabián Morales de la Asociación de Enfermedades Neuromusculares de Canarias (ASENECAN).

La segunda parte le tocará el turno a las asociaciones, que con su voz expondrán el desafío integral y global de las enfermedades raras, con Sergio Barrera Falcón, representante territorial de FEDER Islas Canarias. El colectivo ‘DEBRA Piel de Mariposa’, a través de Eugenia Méndez Hernández, hablará de la importancia de la implicación de las administraciones públicas. Otros colectivos participantes son la Asociación de Afectados por Acromatopsia y Monocromatismo de Conos Azules; la Asociación Española de Linfangioleiomiomatosis (AELAM); ‘Stop-Fa Ataxia de Friedreich’ y su representación en Canarias; la Fundación Canaria Oliver Mayor contra la Fibrosis Quística, y la Asociación de Arteritis de Takayasu y la Asociación de Discapacidad, Enfermedades Raras e Integración Social (Aderis). Se concluirá la jornada con un taller denominado ‘Contando contigo’.


92 Commentarios en "Granadilla celebra hace más de una década una Jornada sobre Enfermedades Raras, único municipio de Canarias"

  1. I just want to mention I’m newbie to blogging and site-building and certainly savored you’re web blog. Almost certainly I’m going to bookmark your blog post . You definitely have tremendous articles. With thanks for sharing with us your web site.

  2. You have brought up a very superb points , appreciate it for the post.

  3. Everyone loves what you guys are usually up too. This type of clever work and coverage! Keep up the amazing works guys I’ve included you guys to my personal blogroll.

  4. I conceive this web site has some really wonderful information for everyone. “Je veux que les paysans mettent la poule au pot tous les dimanches.” by King Henry IV of France.

  5. Thanks for the article. My partner and i have constantly observed that the majority of people are eager to lose weight because they wish to look slim plus attractive. Having said that, they do not always realize that there are many benefits so that you can losing weight also. Doctors state that fat people suffer from a variety of disorders that can be instantly attributed to their own excess weight. The great thing is that people who definitely are overweight along with suffering from a variety of diseases are able to reduce the severity of the illnesses by losing weight. You possibly can see a progressive but noted improvement with health as soon as even a small amount of fat reduction is realized.

  6. Good info and right to the point. I don’t know if this is truly the best place to ask but do you folks have any thoughts on where to hire some professional writers? Thank you 🙂

  7. Simply want to say your article is as astonishing. The clearness to your put up is just excellent and that i could think you’re knowledgeable on this subject. Well along with your permission let me to snatch your RSS feed to keep up to date with coming near near post. Thanks one million and please carry on the gratifying work.

  8. Hello There. I found your blog using msn. That is an extremely well written article. I’ll make sure to bookmark it and come back to learn more of your useful info. Thank you for the post. I’ll definitely comeback.

  9. Hiya, I am really glad I’ve found this information. Today bloggers publish just about gossip and net stuff and this is actually frustrating. A good blog with interesting content, this is what I need. Thanks for making this site, and I’ll be visiting again. Do you do newsletters by email?

  10. I was examining some of your posts on this internet site and I believe this website is really informative ! Keep putting up.

  11. Great – I should certainly pronounce, impressed with your web site. I had no trouble navigating through all the tabs as well as related info ended up being truly simple to do to access. I recently found what I hoped for before you know it at all. Quite unusual. Is likely to appreciate it for those who add forums or something, web site theme . a tones way for your customer to communicate. Excellent task.

  12. Thanks for helping out, good information. “A man will fight harder for his interests than for his rights.” by Napoleon Bonaparte.

  13. I went over this web site and I conceive you have a lot of wonderful information, saved to fav (:.

  14. Simply wanna say that this is handy , Thanks for taking your time to write this.

  15. I got what you intend, thankyou for putting up.Woh I am delighted to find this website through google. “I was walking down the street wearing glasses when the prescription ran out.” by Steven Wright.

  16. We’re a group of volunteers and starting a brand new scheme in our community. Your site offered us with helpful information to work on. You have performed a formidable process and our entire community might be grateful to you.

  17. Attractive section of content. I just stumbled upon your website and in accession capital to assert that I acquire actually enjoyed account your blog posts. Anyway I will be subscribing to your feeds and even I achievement you access consistently rapidly.

  18. I have learn some excellent stuff here. Definitely price bookmarking for revisiting. I wonder how a lot effort you place to create the sort of fantastic informative site.

  19. Thank you for sharing superb informations. Your web site is so cool. I am impressed by the details that you have on this web site. It reveals how nicely you understand this subject. Bookmarked this web page, will come back for more articles. You, my friend, ROCK! I found just the information I already searched all over the place and simply could not come across. What an ideal web site.

  20. Of course, what a fantastic website and enlightening posts, I surely will bookmark your blog.Have an awsome day!

  21. Hey very cool website!! Man .. Beautiful .. Wonderful .. I will bookmark your web site and take the feeds also…I’m glad to seek out a lot of useful information right here within the submit, we want work out extra techniques in this regard, thank you for sharing. . . . . .

  22. You are my aspiration, I own few blogs and often run out from post :). “No opera plot can be sensible, for people do not sing when they are feeling sensible.” by W. H. Auden.

  23. I relish, cause I found just what I used to be looking for. You’ve ended my 4 day long hunt! God Bless you man. Have a nice day. Bye

  24. I truly appreciate this post. I’ve been looking everywhere for this! Thank goodness I found it on Bing. You have made my day! Thx again!

  25. My brother suggested I might like this web site. He was entirely right. This post truly made my day. You can not imagine just how much time I had spent for this info! Thanks!

  26. great post, very informative. I wonder why the other experts of this sector don’t notice this. You should continue your writing. I am sure, you’ve a great readers’ base already!

  27. In the awesome scheme of things you actually receive a B- just for effort. Where you actually misplaced everybody ended up being on your details. You know, people say, the devil is in the details… And that couldn’t be more correct right here. Having said that, let me tell you just what exactly did give good results. The writing is definitely incredibly engaging and this is possibly the reason why I am making the effort in order to comment. I do not really make it a regular habit of doing that. Second, while I can see a jumps in reason you come up with, I am definitely not convinced of just how you appear to unite the details which inturn make your final result. For the moment I will subscribe to your point but trust in the near future you actually connect the dots better.

  28. A financial advisor is your planning companion.

  29. This is true for investment recommendation as well.

  30. And that is an funding risk worth taking.

  31. A monetary advisor is your planning associate.

  32. And that is an investment danger price taking.

  33. And that is an funding threat price taking.

  34. Schwab Intelligent Portfolios invests in Schwab ETFs.

  35. And this is an investment threat price taking.

  36. “Your way of describing the whole thing in this post is genuinely good, all can easily understand it, Thanks a lot.”

  37. Excellent beat ! I wish to apprentice while you amend your website, how can i subscribe for a blog site? The account helped me a acceptable deal. I had been a little bit acquainted of this your broadcast offered bright clear concept

  38. We’re a group of volunteers and starting a new scheme in our community. Your web site provided us with valuable info to work on. You’ve done an impressive job and our entire community will be grateful to you.

  39. I simply want to say I am just new to blogs and actually savored you’re website. Likely I’m likely to bookmark your blog post . You absolutely come with wonderful articles and reviews. Thanks a lot for sharing with us your blog.

  40. Can I just now say such a relief to discover one who truly knows what theyre dealing with on-line. You actually know how to bring a concern to light and earn it important. Lots more people have to look at this and see why side of the story. I cant think youre not more popular because you certainly develop the gift.

  41. I would like to point out my appreciation for your generosity in support of those people that really want help on the question. Your very own commitment to getting the message along became astonishingly useful and have without exception empowered workers like me to arrive at their ambitions. Your interesting tutorial can mean much a person like me and even further to my mates. Many thanks; from all of us.

  42. I believe in everything until it’s disproved. So I believe in fairies, the myths, dragons. It all exists, even if it’s in your mind. Who’s to say that dreams and nightmares aren’t as real as the here and now?’ By John Lennon

  43. Very good article. I absolutely love this website. Thanks!

  44. You have made some good points there. I looked on the web to find out more about the issue and found most people will go along with your views on this site.

  45. Hello there! I could have sworn I’ve visited this web site before but after going through a few of the posts I realized it’s new to me. Regardless, I’m certainly happy I found it and I’ll be bookmarking it and checking back frequently.

  46. Good write-up, I am regular visitor of one’s blog, maintain up the nice operate, and It’s going to be a regular visitor for a long time.

  47. Having read this I believed it was very informative. I appreciate you finding the time and energy to put this information together. I once again find myself spending way too much time both reading and leaving comments. But so what, it was still worth it.

  48. A fascinating discussion is worth comment. I think that you need to write more about this subject, it may not be a taboo subject but generally people do not discuss such subjects. To the next! Many thanks!

  49. I am now not sure the place you are getting your info, however good topic. I must spend a while finding out much more or figuring out more. Thank you for wonderful info I was in search of this information for my mission.

  50. I have seen lots of useful things on your web page about pcs. However, I have the view that notebook computers are still more or less not powerful adequately to be a wise decision if you frequently do things that require plenty of power, like video editing and enhancing. But for web surfing, word processing, and many other prevalent computer functions they are okay, provided you do not mind the tiny screen size. Thank you sharing your notions.

  51. Really Appreciate this article, can you make it so I receive an email every time you publish a new update?

  52. I was able to find good info from your blog posts.

  53. The very next time I read a blog, I hope that it doesn’t fail me as much as this particular one. After all, I know it was my choice to read, however I actually thought you would have something useful to talk about. All I hear is a bunch of whining about something that you could possibly fix if you weren’t too busy searching for attention.

  54. An impressive share! I’ve just forwarded this onto a colleague who had been conducting a little homework on this. And he in fact ordered me dinner simply because I found it for him… lol. So allow me to reword this…. Thank YOU for the meal!! But yeah, thanx for spending the time to discuss this issue here on your blog.

  55. A fascinating discussion is worth comment. I think that you need to write more about this subject matter, it may not be a taboo subject but usually people do not discuss such topics. To the next! All the best.

  56. You are so cool! I do not think I’ve read something like this before. So nice to find somebody with unique thoughts on this subject. Really.. many thanks for starting this up. This website is one thing that is required on the internet, someone with a bit of originality.

  57. There is definately a great deal to learn about this topic. I love all the points you have made.

  58. When I originally left a comment I appear to have clicked on the -Notify me when new comments are added- checkbox and from now on whenever a comment is added I receive 4 emails with the exact same comment. Perhaps there is an easy method you are able to remove me from that service? Appreciate it.

  59. An interesting discussion is definitely worth comment. I think that you ought to publish more on this topic, it may not be a taboo subject but usually people don’t speak about such subjects. To the next! Best wishes.

  60. I blog quite often and I seriously thank you for your information. This great article has really peaked my interest. I’m going to bookmark your website and keep checking for new information about once a week. I opted in for your RSS feed as well.

  61. An outstanding share! I’ve just forwarded this onto a friend who has been doing a little research on this. And he in fact ordered me dinner because I found it for him… lol. So allow me to reword this…. Thanks for the meal!! But yeah, thanx for spending the time to discuss this matter here on your internet site.

  62. When I initially left a comment I appear to have clicked the -Notify me when new comments are added- checkbox and now whenever a comment is added I recieve four emails with the same comment. Is there a way you are able to remove me from that service? Many thanks.

  63. I was able to find good advice from your blog posts.

  64. This website truly has all the information and facts I wanted about this subject and didn’t know who to ask.

  65. Way cool! Some extremely valid points! I appreciate you writing this post and also the rest of the site is really good.

  66. I like what you guys are up too. Such clever work and reporting! Carry on the superb works guys I¡¦ve incorporated you guys to my blogroll. I think it’ll improve the value of my site 🙂

  67. Thank you, I have recently been searching for info approximately this subject for a long time and yours is the best I’ve discovered so far. However, what in regards to the bottom line? Are you certain about the supply?

  68. There is evidently a lot to realize about this. I believe you made certain good points in features also.

  69. I really like it when individuals get together and share thoughts. Great website, stick with it!

  70. Great paintings! This is the kind of information that should be shared across the net. Disgrace on Google for now not positioning this submit upper! Come on over and consult with my web site . Thanks =)

  71. I’m extremely pleased to discover this page. I wanted to thank you for your time due to this fantastic read!! I definitely appreciated every little bit of it and i also have you saved to fav to see new stuff in your web site.

  72. Wow, superb blog layout! How long have you been blogging for? you make blogging look easy. The overall look of your website is great, let alone the content!

  73. I love it when people get together and share views. Great blog, stick with it!

  74. I was more than happy to uncover this website. I need to to thank you for ones time for this fantastic read!! I definitely appreciated every bit of it and i also have you bookmarked to check out new information in your blog.

  75. I blog frequently and I seriously thank you for your information. Your article has truly peaked my interest. I’m going to book mark your website and keep checking for new information about once per week. I subscribed to your Feed as well.

  76. I like it when individuals come together and share thoughts. Great blog, continue the good work.

  77. This website was… how do you say it? Relevant!! Finally I’ve found something which helped me. Many thanks.

  78. Pretty! This has been an extremely wonderful article. Thank you for supplying this info.

  79. I am often to blogging we actually appreciate your posts. Your content has truly peaks my interest. I will bookmark your internet site and maintain checking for brand spanking new details.

  80. Hi there! I could have sworn I’ve visited this website before but after looking at some of the posts I realized it’s new to me. Anyhow, I’m certainly delighted I stumbled upon it and I’ll be book-marking it and checking back regularly!

  81. Very good post. I certainly appreciate this site. Keep writing!

  82. That is a really good tip especially to those fresh to the blogosphere. Short but very accurate information… Thank you for sharing this one. A must read article!

  83. Hello.This article was extremely fascinating, particularly since I was browsing for thoughts on this topic last Saturday.

  84. You’ve made some good points there. I checked on the internet for more information about the issue and found most individuals will go along with your views on this web site.

  85. Hi there! I simply wish to give you a big thumbs up for the excellent info you have got here on this post. I am coming back to your web site for more soon.

  86. Pretty! This has been an extremely wonderful post. Many thanks for providing this info.

  87. After I initially commented I appear to have clicked on the -Notify me when new comments are added- checkbox and now every time a comment is added I receive 4 emails with the exact same comment. Perhaps there is an easy method you can remove me from that service? Kudos.

  88. I would like to thank you for the efforts you have put in writing this blog. I really hope to check out the same high-grade content from you later on as well. In truth, your creative writing abilities has motivated me to get my own site now 😉

  89. I could not resist commenting. Exceptionally well written!

Deja tu comentario

Tu dirección email no será publicada.